A Summer Camp For Jake

Boy With Rare Disease Gets Chance To Be A Kid

COCONUT CREEK — From the look of him, Jake Stephens is perfect. And 5. Very, very 5.

"I'm an expert magician," he explains, pretending to pull a quarter out of his ear and giggling over his success. "I've been practicing since I was 3."

But behind typical kindergarten antics like roughhousing with his baby brother, there is a silent problem that only his parents think about all the time.

Jake was born with a rare form of spina bifida. Because there is an opening in his vertebrae that isn't supposed to be there, doctors worry the sac of fluid that supports his spinal cord could continue to grow through the opening and pull the cord out of place. That could rob Jake of his neurological functions.

For now, he is doing very well. He is in a regular classroom, but keeps a "shadow" with him to make sure he stays safe. Jake is prohibited from bounce houses or trampolines at birthday parties, and all contact sports, to protect his neck. He can't dangle from the monkey bars for fear of falling, and his parents worry about whiplash.

"He can't stand being different," sighed his mother, Alyssa Stephens.

That's why she desperately wanted him in a regular summer camp program where he could play with other children. But with her limited finances drained by medical bills, and Jake's condition, "I was turned away over and over," Stephens said.

The Soref Jewish Community Center in Plantation came through. Officials picked up 50 percent of the bill for summer camp, and even assigned Jake his own personal counselor-in-training to make sure he doesn't hurt himself.

Although the camp is for all children ages 15 months to 15 years old, "everyone has special needs as far as I'm concerned, everybody every day of the week has issues," said Judy Kissel, camp director. "Their needs can be as simple as Mommy and Daddy are in a nasty custody battle, or Grandpa is in the hospital and Mommy is sad."

In years past, blind children, deaf children and children with muscular dystrophy and cerebral palsy have attended the camp.

"We mainstream them," Kissel said. The other kids learn about compassion and tolerance. "They have a tremendous capacity to learn those skills."

The same holds true in Palm Beach County. At the Adolph & Rose Levis Jewish Community Center in Boca Raton, the summer camp program has its own separate section for special needs kids, but parents can mainstream them if they choose, said spokeswoman Janet Elinoff.

"Summer camp is critical," she said. "Many of these children [would be] stuck at home."

Alyssa Stephens knew from the beginning there was a problem, because her baby's head was tilted. She went from one doctor to another looking for answers. "They kept telling me, 'You are a worried mom, you're reading too much into it,'" she said.

Alyssa Stephens went to a neurosurgeon who said the baby was fine. She even tried physical therapy, thinking that maybe doctors were right and Jake just had weak neck muscles.

"Not only was it not working, he was screaming in pain," she said.

Finally, at age 1, Jake was diagnosed with the rare form of the disease in which the problem is on the inside of his vertebrae.

When it's the outside - the backside - that is affected, as is more common, there's disfigurement, but surgeons can reach the source of the problem more easily.

Surgery would be risky, as complications could trigger the loss of neurological function or even cause death. Jake's neck would have to be fused, making it impossible for him to turn his head. Alyssa Stephens didn't want to compromise her baby, who was singing the alphabet early.

So Stephens wrote letters to the 10 top-rated teaching hospitals in the country, asking them to take her son as a patient. All were eager to work on such an unusual case, so she and her husband, Dean, got to pick what they hoped was the best of the best: Children's Hospital Boston, run by Harvard Medical School.

Stephens quit her job to stay home with Jake. The family flew to Boston for tests every three months. The medical bills began piling up: Each test required $2,200 worth of anesthesia, which brought on asthma attacks that meant oxygen masks and a bigger bill. The family panicked about the mounting debt.

Only this year, the Stephens family was able to get a loan modification to keep their Coconut Creek house.

Christmas and Hanukkah - the Stephenses celebrate both - presents will be few this year because they are trying to keep up with the essential bills.

Even if it's a paltry holiday, the boys have something huge to look forward to: another summer session at Soref JCC.

Jake talks lovingly about camp, where he will be going for a fourth year. "Math, field trips" and playing in the water are his favorite activities.

His mother is grateful to the Soref center, not only for its monetary support, but for its attitude toward Jake.

"The JCC was the only one who would help us financially," she said, "and the only ones who didn't make me feel like he's a huge liability."

Lisa J. Huriash can be reached at lhuriash@SunSentinel.com or 954-572-2008.

INFORMATIONAL BOX:

About the Soref JCC

For every family or person featured in Sun Sentinel Children's Fund stories, there are many more in need. The agency spotlighted today, the Soref Jewish Community Center, wants to help more of them. To learn more: In Broward County, visit sorefjcc.org or call 954-792-6700. In Palm Beach County, visit levisjcc.org or call 561-368-9328.

To contribute to the Sun Sentinel Children's Fund, go to SunSentinel.com/childrensfund or call 800-519-2480.